STORIES

Artists with OI: Ditte Johansen

Can you tell us a little about yourself?

My name is Ditte, and I’m a 25-year-old woman, that is born – and still living – in Denmark. I’m working as a writer, and besides my ordinary and boring adult life, I’m filling my days with lots and lots of hobbies; I’m an actor, an author and “a public person” in some ways when the opportunity presents itself. I love having a lot on my plate, so I’m always busy, busy, busy!

When did you decide to publish a poetry book?

Well, that simply wasn’t a decision I had to make. I’m born with a creative nature and an artist’s soul, so writing has always been an innate interest. And if you love books and is writing yourself, it is my conviction that you will cross the poetry genre minimum once in your life. 

How did you do the publishing?

Since I was 18 years old, I’ve tried to publish my stuff at all costs. But all the profiled publishing companies wouldn’t touch any of my scripts even from a distance. I knew what kind of authors they wanted, but that wasn’t me. And instead of changing my personal touch and risking to lose myself in the process, I simply gave up. My integrity has always been my first priority, so I just locked my scripts away in a drawer and forgot all about my dreams. Until the day, when my boss introduced me to one of her friends; a publisher who was only interested in poetry. So I took the chance, and he LOVED my script! And the rest is – well – history…

Why do you deal with psychosocial aspects and OI in your poems?

As I see it, OI and psychosocial aspects are just two sides of the same coin. If you – as a person with OI – are telling everyone that you can’t acquaint yourself with some kind of psychosocially related problem, you’re lying. Being different; being a minority will always create some frustrations associated with having OI, be in a lot of pain, etc. I wanted to tell an honest story from a disabled person’s perspective. There’s a huge lack of honesty associated with being disabled. The stories you’ll probably find nowadays will generally be these nauseating heart-warming stories, that aren’t even telling the (whole) truth. 

What projects are you currently working on?

As I said before, I love having a lot on my plate, so I’ve currently got three projects that I’m working on. I just signed a new contract with my publisher for my next poetry collection, which will be a follow-up to my first one. I’ve also finished the English translation of my first book – “Puppet Infirmary”. Both of them are getting (re)published by the end of the year. So all you English-reading people – there’s a lot in store for you! Meanwhile I’m working on a novel, but that project may not happen for a long time. But it will come sooner or later. I’m stubborn and hard-working.

What role does the artist have in society?

I don’t think that art should be art, just because it could be. Or that you should be an artist because you can. Art is like air – even though you’ll never see it, you can’t live without it. If society was a big vase, art would be the glue that’s sticking all the broken pieces together over and over again. If we eliminate all kinds of art – the society would corrode and crumble away. Being an artist is an important job – maybe one of the most important ones, because you’re the voice of other people. Whether you paint or write, you are channelling emotions through your book or painting, that they may not be able to express themselves. You’re telling their stories for them, so to speak. And that’s why artists are so important to society – because they’re expressing all your personal feelings, even when you can’t do it yourself.  

Is there anything you like to tell our readers?

Please be honest, with yourself and with others! The stories you tell, may be other people’s guidelines. And if what you say isn’t true, you’ll mislead them. If life is hard – tell them! If life is freaking awesome – tell them! We all have the responsibility to teach the next generations what life is about and how you live it. With or without OI – that doesn’t matter. No one is satisfied with a soothing lie. 

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STORIES

Artists with OI: Matt Shilcock

Who are you and what do you do?
My name is Matt Shilcock, I am a contemporary dancer and performing artist from Adelaide, South Australia. I have been creating and performing dance theatre works in festivals and locations around the world over the last 10 years. I predominately perform Contemporary Dance, but living with OI, I occasionally, jokingly, refer to what I do as ‘break dancing’.

My dance and choreographically practice is heavily influenced by what ever injuries and fracture (past and present) that I am dealing with and how I adapt my movement to care for these injuries and integrate my mobility aids. Living with OI, naturally, fractures happen frequently. Often I need to improvise mid performance to adapt to whatever my body is dealing with. Each performance within a season can be vastly different to the night before.

Why do you do what you do?
Originally, because dance classes are cheaper than physiotherapy, but dance has given me a better understanding of and relationship to my body and environment. Through dance I’ve gained a great movement vocabulary to assist me to prevent injuries and to sustainably keep going on with life when I have fractures.

What themes do you pursue?
Themes that I like to explore in my work include Shamanism, Alternative Healing, Medieval Alchemy and Trauma. For me, it’s important that art is a healing and empowering process for the artist and audience.

What kind of work do you most enjoy doing?
My favourite is improvised durational work. My longest work was a 6 hour “living sculpture” in a small gallery. I enjoy the endurance challenge of durational work and exploring the mediative state that comes from long periods of practice.

What role does the artist have in society?
I feel that the Artist’s role in society is that of a ‘liminal persona’. Liminal, referring to the space in between two things (eg. an open doorway – the threshold between two rooms, or the inside and outside). I feel that artists ‘empty’ themselves through their craft, becoming a vessel for their audience to interpret, relate and project themselves on a work, allowing them to process some aspect of their own individuality. In this way, the role the artist (or their work) is to hold up a mirror to society. The work I make, or the ‘mirror’ I hold up, will not allows reflect something that is conventionally pleasing to look at, but like eating our vegetables, sometimes the most unpleasant experience (the bitterest taste, the sharpest smell, the ugly painting, the painful dance) is the one that is the most beneficial to us.

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STORIES

Artists with OI: Veronica Tulli

Interview and translation: Anna Rossi

Can you introduce yourself?
My name is Veronica Tulli and my stage name is LuluRimmel. I live in Rome, Italy. I am a singer, songwriter and performer. And I am quite confident in saying this. But I do not hide that at least in Italy, this is quite a bold sentence. It is not that easy to do singing and performing for a living. Often it is not even considered a real job. You have to jostle and work really hard. I sing and perform in several shows of different nature, sometimes also dark and grotesque. The latter as LuluRimmel, my character: a doll that plays ukulele. I am also part of an acoustic duo with my partner Guido Maurizio Doria, called “Pancake Drawer”. In this project I have the chance to express myself more as a songwriter. We write together the lyrics and the music. And this is really the thing I love the most. I sing and play ukulele, and my partner plays the guitar.

In which way has OI brought you to arts? And how has this influenced your arts and you being an artist?
I am pretty sure I would have been an artist even without OI. Because I think that arts and music is a need that each one can feel in a different way. From a social point of view, I am sure that my projects have somehow an impact in the world of disability. It is like people can read a social and cultural statement in my art. I believe that music is simply just music, and that it has itself a powerful and strong message to overcome any obstacle and barrier. I sing and play because I love doing it. I do not care so much of being an example. I believe that telling people about myself and express myself through music have a meaning for the people that are listening to me or watching me.

Tell us more about the movie “Heart of a Doll”!
The project was created during an informal meeting with some good coffee together with Antonio Di Domenico, the director of the documentary. At the beginning it was supposed to be the first episode of a series: people with different backgrounds and different physical difficulties, talking about their arts and stories. “Heart of a Doll” talks about my life, mainly the artistic side of it. And it highlights the adventures, the losses, the victories…it is all authentic. It is the story of a girl following her dream, to be a full-time artist and making a living through it. We are now showing the movie in different theaters in Italy, but we would love to show it in other countries as well.

Do you have other upcoming projects?
For the time being Guido and I are focusing on our duo “Pancake Drawer”. We are thinking about recording an album, the first one with our own unreleased tracks. This is something we do really believe in, and we cannot wait to start working on it, we would love to sing more and more often and on as many stages as possible, both in Italy and abroad.

Why did you start singing and acting?
I would refer to myself more as a performer, to be honest even in the documentary there is not that much acting. I have attended some acting classes in the past, but never at a professional level. About singing, I have been singing since I first started to talk. As a kid I was always singing, it made me happy. When I was 17, I decided to do it in a more conscious and focused way and I decided to attend singing classes. I started because I needed to find my own way to express what I was feeling inside, music always made me feel the most deep and strong feelings, so I decided to sing.

Which are the themes and topics that are closer to you and that you often talk about in your art?
In my songs I often talk about my dreams and my hidden places. I mostly talk about love. Actually, I believe that every song ever written is somehow a love message. I talk about simple stuff that everyone can relate to and understand. Feelings belong to everyone. I would like that by listening to one of my songs people could say “Oh yes, it has happened to me as well. I have felt like that!

When I listen to music, there is always a song that can catch and express what I am feeling in that precise moment. It makes me feel better to know someone can feel what I also feel. To be honest there is not always a precise stated message, sometimes people just want to express what he/she is or feels.

What do you prefer between singing and acting?
When I play my character LuluRimmel the acting part is really important, but it wouldn’t mean much without the songs played with ukulele. I have fun playing this role of a doll. It’s never clear if she is really silly or if she fakes it, and laughs for no reason. It allows me to play with the first impression of people, with their prejudices about my disability which is physically quite clear and visible. When I sing and play with my duo, on the contrary, there is no character. I am myself with our songs. Acting is nice and fun. But honestly, the hardest and the best thing at the same time is being yourself without masks.

What is your most scary or dangerous work experience
There is this place called “Bottega degli Artisti” where I do perform every now and then. Every time I perform there, I end up climbing up some strange and potentially dangerous places. On a piano, on some kind of carts, on a bench, on some boxes, or a bookshelf…

Due to my short stature it is more spectacular when I am placed somewhere very high. Dressed up as a doll I keep myself still and then I greet by waving my hand to the audience when they come in, as they ask themselves if I am real or fake. Yes, this is or can be somehow dangerous. But I have fun and I am not afraid or scared.

Who is your favourite artist?
I do like many different artists for many different reasons. I do like Nirvana, Amy Winehouse, Johnny Cash, Elvis Presley, Lady Gaga, Beatles, The Cure, The Smiths, Marilyn Manson, Ghost, Slipknot and many others….What I like most is the background stories of some people or groups, their philosophy. As for the movies, I love Tarantino, all his movies and his genius.

What is your favourite piece of art?
Monet Waterlilies. I have seen them in Paris and I got emotional. I also used them as main topic of my final work at high school. I find them visionary and relaxing. The idea of Monet painting so many different versions observing the same thing or something that is always the same, but so different every time, is really fascinating to me.

What is or should be the role of artists in the society?
An artist has the privilege to leave a mark in the everyday history. The causes he/she supports and the messages that he/she spreads are heard from much more people, especially if he/she is a well-known artist. What is really perfection is when by only expressing himself/herself an artist can bring and spread a message for all, a message of equality and diversity.

I believe it is important to fight for rights for everyone even when we are not personally or directly involved by a problem or a topic. An artist with a big audience, in my opinion, has a social responsibility. He or she can influence or drive the lives of people in a positive way.

What is your secret dream?
Play in some New York club with “Pancake Drawer”. I have never been there, and I would love to have people listen to our music and our songs there.

You can find Veronica on Facebook: and she also has her own Youtube channel.

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STORIES

Artists with OI : Ketut Budiarsa

Who are you and what do you do? My name is I Ketut Budiarsa. I am a Balinese man from Kedewatan, Ubud, Bali, Indonesia. I am the head of Yayasan Cahaya Mutiara Ubud which is a foundation run by people with disabilities, for people with disabilities. I am an accomplished artist and an activist for the rights of people with disabilities. I also have Osteogenesis Imperfecta as do my two brothers.

In what way has OI affected your art? Even though my artwork has, at times, been perceived as reflecting sadness, I am always at my happiest when brushing paint on canvas. Painting is a therapeutic outlet and a pressure release for me. It is a natural form of self-expression that allows me to express my life experiences, memories and emotions. Being able to focus what I feel inside to the outside by using acrylic and oils I can freely project my emotions onto canvas. Osteogenesis Imperfecta has inspired by work just as much as it has limited my life. It has allowed me to express my individuality on a level that is certainly not ordinary and for that I am truly thankful.

What projects are you currently working on? I am currently working on hosting an OI Seminar here in Indonesia. We wish to bring together international and Indonesian medical professionals to share knowledge about OI so that we can improve the quality of life for Indonesian people living with OI.

Why do you do what you do? Having a disability in Indonesia is difficult. Life is complicated and we have limited access to opportunities and life experiences. Whilst we may not allow our disabilities to define us our society certainly confines us. My OI has given me an insight into the suffering of others, it allows me to feel empathy for their position and compassion for those who are vulnerable and at risk. That is why I pursue my work with Yayasan Cahaya Mutiara and try to reach out to other people with disabilities who have no help or support.

What themes do you pursue? When we were children my brothers and I decided that our shared natural talent and passion for art into a possible occupation, into a reality that would empower us to be considered valued community members. We were fortunate to meet Balinese artist I GustiMurniashi whilst we were at school and we were drawn to her style of using traditional Balinese techniques with a modern twist. The works for our first exhibition were produced in her honour and showcased her iconic style. This exhibition was opened by Maestro Kartika Affandi, a very famous Indonesian artist. After the exhibition Maestro Kartika became our art mentor and guide. Today I would say that the main theme for my work emanates from the emotions surrounding and connected to my life and living with OI. The style of my work is shaped from the teachings I have been lucky enough to receive.

What kind of work do you most enjoy doing? I enjoy working with oils and acrylics on canvas.

What’s your scariest experience related to your work? The opening of our first exhibition and being afraid that people would not accept or like our work because of our disabilities. Critical.

What’s your favourite art work? My favourite works continue to be those of my first teacher and mentor, I Gusti Murniasih.

What role does the artist have in society? In Bali art is deeply entwined with our culture. It is a way of life. The artist is both story teller and a story keeper.

What is your dream project?
To help many people with Osteogenesis Imperfecta and to open the minds of all people about Osteogenesis Imperfecta. To develop a large community to help Indonesian’s living with OI.

translated into English by Kim McCreanor

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Mira Thompson singingSTORIES

Artists with OI: Mira Thompson

Who are you and what do you do?

My name is Mira Thompson and I’m a singer.

In what way has OI affected your art?


As much as I want to say it hasn’t, I also know it completely affects the way I look at life in general. Which does not mean every song I write is directly connected to disability or ableism, but I also don’t avoid those subjects. But to me they are as important as writing a beautiful song about heartbreak, to name an original subject. 
I do, however, feel responsible for using my voice (quite literally) to advocate for disability rights. Music can be a powerful way of doing that. I recently released a song that I made with my friend Femke Smit using sounds my power chair makes. The lyrics are meant to be a bit confrontational. I’ve used what I see as some of the thoughtless statements and questions posed to those with visible disabilities. 
I dubbed the lyrics over the wheelchair sounds. Although the lyrics might seem to be a bit cynical, it was important for me to radically ban senti-mental emotions about this subject. My friend Feline Hjermind, who is a video-artist, made a video clip to accompany the song. Interested parties can find it under the title ‘Tiny Shoes’ (Mira Thompson) on YouTube:

What themes do you pursue?


Just about anything that captures my imagination can become a theme for my music. For example I am now working on a song inspired by my own shadow. I found the idea of a shadow of something (or someone) very small taking on large proportions as a shadow. Fascinating!

What role does the artist have in society?


I don’t think I get to decide what role an artist has in society. An artist can fulfill so many roles and functions in society. One of my hopes is to be able to provide a sense of connectedness for people. Although I definitely don’t think art has to be political, I do think that is one of it’s possible functions.
For example, I strongly believe that it is a political act in itself for a woman with a visible disability to perform on stage. 
If my music reaches lots of different people on lots of different levels, then I have succeeded.

What is quality of life for you?


For me, quality of life is being able to keep developing in every aspect of my life. This means not being held back by social and/or physical barriers or restraints. That can range from simple accessibility issues to access to education and openness in all kinds of social situations.

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